Kai’s parents ‘won’t give up’ on son’s survival

LIZZY BUCHAN

SMILING as they hold their brave little boy, there is no sign of the torment going on inside the heads of proud parents Calvin Laidlaw and Pam Neilson.

They’ve been told doctors can do little more for two-year-old Kai, who has fought valiantly against leukaemia almost all of his short life.

Kai is a daddy's boy. Picture: Ian Georgeson

But they’ve refused to accept defeat and have made the bold decision to travel to London, where Kai will undergo an experimental transplant.

It comes with no guarantees – but it is their only hope of saving their precious son’s life.

Pam said: “We have been told by doctors that we should seriously consider not getting Kai any more treatment and just enjoy our last few months with him.

“We had been hoping that if we could just get him through his first few years then his chances of survival would be better.

I think if we didn’t try, we would always say ‘What if we had?

“But if you could see Kai now, he is so cheeky and always laughing. He seems just like any other toddler.

“My husband and I just can’t give up on him.”

Kai has been in hospital constantly since he was diagnosed with an aggressive form of blood cancer – known as infant acute lymphoblastic leukaemia – in September 2013, when he was just eight months old.

Since then the young lad and his family have been through extensive, intrusive care in Ward 2 of the Sick Kids – at one point the family called the children’s hospital home for four full months.

'Kai is such a happy, loving boy', says Pam. Picture: Ian Georgeson

Brave Kai has faced gruelling treatment, including chemotherapy and radiotherapy, to fight the disease.

Due to the aggressive nature of the leukaemia, he had to have his left eye removed in February 2014 as the condition had spread to a part of the eye which was dangerously close to his brain – making radiotherapy unsafe.

He was given a round implant, which was put inside his eye socket and wrapped in a donor sclera before his eye lid was closed over.

Kai was then given a prosthetic eye lens, similar to a contact lens but made of acrylic material.

Despite suffering from a number of serious infections which took him back into hospital, Kai was able to return to the family home in Leith for a few months and enjoy a semblance of a normal life.

The family even spent their first holiday away together to Seton Sands, in East Lothian, which was organised for them by CCLASP – a charity which helps to support children and teenagers suffering from cancer or leukaemia.

But in March doctors broke the tragic news that Kai had relapsed and more than 50 per cent of the bone marrow in his tiny body was riddled with cancer.

The family has been told their only choice is to take Kai to London for an experimental bone marrow transplant at Great Ormond Street Hospital, as this specific treatment is not available in Scotland.

Pam said: “The chances of survival are not great – but what choice do we have?

“I have to give my little boy the chance of a future.

“The only thing he has ever known is hospitals and I feel I would be letting him down if I didn’t try.

“As a parent you have no control over your child’s cancer, over where this journey takes them. We are being told by everyone that Kai won’t survive, but if you look at him he’s just such a perfect little boy.

“I asked the doctors to be brutally honest as we don’t have time not to be – only months left maybe.

“I think if we didn’t try, we would always say ‘What if we had done the treatment?’.

“I think that would take a heavy toll on both me and my partner for the rest of our lives.”

The surgery is planned for July and if Kai responds well then the family could be in London for months.

Follow-up treatment will need to be delivered by the experts at Great Ormond Street due to the experimental nature of the procedure.

But the family has been placed in an impossible situation as Kai’s dad Calvin, 49, might not be able to travel with them as he has progressive multiple sclerosis (MS).

Calvin was diagnosed with the degenerative disease in 2009 and his condition had deteriorated so much by the time Kai was born in 2012 that he was forced to start using a wheelchair.

That means he would need a carer and specialised accommodation in London, which the hospital is unable to provide.

Pam, 38, said: “We have been told that the hospital can’t provide the facilities he needs so we can be a family.

“We will need each other and Kai may not survive.

“Kai is very much a daddy’s boy and he needs his dad.”

The family has launched a desperate bid to fund their trip to London, but they have no idea how much money they need to raise.

She said: “Doctors were saying ‘why can’t Calvin stay at home in Edinburgh while we went to London?’.

“But what if we are away for months and Kai doesn’t make it?

“That would finish a parent off.”

Family and friends have rallied round the generous family, who have selflessly raised thousands of pounds for CLIC Sargent and other charities, as well as raising funds for the ward at the Sick Kids hospital where Kai has received such good care.

Pam even donated a giant teddy to 15-year-old Leon Rendle, whose story has featured regularly in the Evening News since he was diagnosed with Ewing’s Sarcoma.

Her voice catching, Pam added: “Everyone on the ward knows him at the Sick Kids and even other parents whose children are going through cancer treatment have been really supportive.

“Kai is such a happy, loving boy and he is loved so much by so many people.

“It is just heartbreaking.”

To make a donation to support the family, visit www.gogetfunding.com/project/kai-s-krusade.